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Polymyalgia Rheumatica and GCA

Also known as GCA - Giant Cell Arteritis, Temporal Arteritis

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  • Pinned

    Reducing pred: dead slow and nearly stop method

    Copied from Eileen's post in another discussion. A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get...

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    PMR-GCA website addresses and resources

    If anyone has any further suggestions for inclusion do not reply to this but please contact me separately. PMR-GCA NE can be found at www.pmr-gca-northeast.org.uk PMRGCA-NW SUPPORT GROUP http://www.pmrgcasupport.co.uk/ The forums within the NE site are here - http://pmrandgca.myfunforum.org/index.php...

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  • Plaquenil for PMR?

    I'm coming up on 4 yrs. since I was diagnosed with PMR.  I'm currently just about at 3.5 mg. Medrol in the morning, and another 0.5 mg. at night.  My Rheumatologist keeps suggesting Plaquenil which I have so far rejected.  Are there any reports of it being helpful in getting off...

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  • Prednisone and Surgery

    Having surgery in two weeks.  Very concerned about healing because of prednisone. Surgeon would like me off it a week b4 but Rhemy wants me to take the level I am at which is 6 1/2 mg then next week go to 6 mg then the following week of surgery 5 mg.   I am sure I will have pain given the quick...

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  • Post steroids

    wow do I know what you are all going through and got the T Shirt. Hopefully Eileen will remember me. Steroid injections and I nearly decided not to marry my lovely husband   because of Polymyalgia  I have now been diagnosed with breast cancer and a recent mastectomy and lymph node clearance....

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  • lbh lbh

    To EileenH please

    I wonder what constitutes a 'flare' and how symptom free one should be? I was recently diagnosed with PMR, responded very well indeed to my initial dose (15mg for 4 weeks). My GP then put the dose down to 10mg which I thought was a big jump considering the NICE guidelines recommend 12.5mg. However,...

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  • Got down to 4.5mg Suddenly started a flare. Advice please

    It’s taken me 4 & half years to get down from 30 to 4.5mg. Now I’m suddenly having a dreadful flare. I’m in so much pain. Tried just increasing to 10mg but I’m still in pain. I’ve only just got rid of my moonface. I really don’t want to go back there again. HELP ME PLEASE 

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  • Scardie Cat

    Happy Mid Summer, Quick question.  I am lucky enough to be down to 1mg of pred. and I have rheumy apt coming up in two weeks.  I know he will want me off pred which is fine.  I am just afraid to come off as I feel absolutely fine (except I would like to chop my feet off at the ankles)...

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  • PMR vs. sero-negative RA

    I had posted earlier about this group's experience with Plaquenil.  During that same discussion with my Rheumatologist, he wondered aloud whether I might have sero-negative RA rather than PMR.  I'm not sure I understand the differences between the 2, other than that PMR will (hopefully)...

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  • 53 and feeling really low with PMR

    Hi I’m new to the discussions on here. I’m 53 and was diagnosed with PMR 9 months ago. I started with such pain in my right hip which almost stopped me riding. Then terrible pain in my right shoulder / neck. 20 mg steroids stopped the pain straight away and Iv been coming g down slowly. But!!! Maybe...

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  • Newly Diagnosed Husban

    Hello everybody, I'm here proxy for my husband as he is not computer literate and wouldnot have the patience to sit and read the various topics. For many years he's had joint pains and stifness - putting this down to post traumatic osteo arthritis following a number of car and motor bike accidents...

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  • Just had my first flare....What to do now?

    Diagnosed late April, 2018, and prescribed 10 mg Pred by rheumatologist.   She said she was going to let me self medicate and try to get down to 7 mg by end of September.   I had not read about the DSNS method, unfortunately, and tried my own.    Everything was fine until last week....

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  • Alendronic Acid - to take or not to take?

    Hi everyone, I have found this site so useful - thank you everyone for providing this lifeline. I haven’t contributed for a while, so quick recap. I am a 64, fit woman who has always exercised regularly through Dance and gym classes. I have been one of the ‘lucky’ ones in that, following diagnosis,...

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  • C-Reactive protein

    I'm trying to go through my blood test history of my inflammation markers and I'm wondering if anyone can tell me what the C reactive protein acronym are on a blood test. The Sed rate (ESR) just shows up as Sed Rate but I can't find the C-Reactive Protein and I'm sure it goes by some...

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  • Hydrocortizone not working on PMR so great after all

    I'm the gal who went to the endocrinologist to see how to reduce my prednisone for the rhumatologist who thinks I don't have PMR, and was put on hydrocortizone instead of pred.  Almost a month later I had a SED rate and other stuff taken and my inflammation has gone up from the high 52 to...

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  • No success in prednisone tapering

    I’ve been so terribly sad lately. I’ve not been able to taper below 20mg.  Between losing my hair, my face resembling a planet, my neck being so fat that I quite literally choke when I’m sleeping, my weight shooting up from 140 to 200lbs...Most days I don’t even want to exist.

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  • New to PMR and not liking it

    In April this year I was given a provisional diagnosis of PMR  following a chest infection and 2 steroid injections just 13 days apart for severe bursitis in my right shoulder.  It was between these injections that I started with joint pains in both shoulders and hips and generally feeling...

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  • Down to 4mg Pred - but suddenly up to 80mg

    My first post was in August 2017 under the heading "Is this just a blip?" To explain my alarming new title: I'd been gradually reducing and had reached 4mg per day. All was well and I had a blood test before seeing the French rheumatologist again last month. He told me to stay on...

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  • Is shakiness a side effect of prednisone?

    I have had PMR for several months.  Started out on 20mg and am now at 12.5.....taking my time.  Dr. wants me to get to 10mg and stay there for a while.  As I started tapering I was having hot flashes too.  They went away as I continue tapering but the shakiness persists.  It's...

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  • Well on the way to saying goodbye to GCA

    Feeling good. CRP had risen to 15 after last 3-monthly blood test and I put it down to playing sport (pétanque) in the rain, catching a cold and an infection affecting the connective tissue in the chest. That passed quickly. The low dose prednisone has virtually wiped all those nasty side-effects,...

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  • Upper back/headaches/fatigue

    I've suffered from headaches for the last few years and it's a norm thing for me now. But for the past few months or so or even few years I cant remember how far back my upper back and new would feel very tender at the end of the day and sometimes during the day itself. It may feel tender to...

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  • Starting Acterma and nervous

    Hi everyone I seldom post but read your discussions often. I live in the US and have been approved to take Acterma injections. I have GCA and PMR diagnosed last July. I haven't been able to taper very much off steroids. I would love your feedback about the medication and especially if you are taking...

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  • Pulled muscles

    Hi every body has any body else suffered from pulled muscles from doing the simplest things a couple of months ago I was hovering up n felt my right shoulder muscle pull then their was pain I tried voltarol but couldn't reach where it hurt to put it on I went to the doc he gave me some baclofen...

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  • Wrist pain when reducing steroids

    I have been tapering steroids for 18months and am down to 5mgs from 20mgs. Suddenly now I have pain in my wrist joints....not really bad but definitely there. My ESR and CRP levels are normal. Is this my body adjusting to the lower dose and should I just push through it? Any thoughts anyone?

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  • pmr and post menapausal bleeding

    has anyone had post menapausal   bleeding   while on pred.    i have had  it for 4 weeks.  hopeing   it will go on its own.  but now   been   for  swabs which are  clear.   had   a smear test ...

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  • No steriods for 3 weeks

    Hi  all is it true that I can be on Prednisone for a long time without any ill effects on my body if only on 5mg. I have  pains again after tapering of the steroids for 18ths. and am thinking of going back to 5mg. I am 78yrs old. Perhaps . I should have a blood test to see if that...

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  • Panic attacks

    so started back on 6 mil of pred  five days ago after being completely tapered to 0 for 2/12 months. was in agony but tried to cope and gave in but. Went to 5 mil today and planning to stay here because I'm pain free then taper in a few weeks to 4. my concern is before I restarted the pred I...

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  • Unexpected pain

    I have been slowly reducing my pred and am almost at 8mg. This is the lowest I have been since starting this journey in 2016. I have never been completely pain free and am feeling the usual added aches in my shoulders and neck that I get when I reduce but this normally settles down after a couple of...

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  • My Polymyalgia Symptoms but Giant Cell too?

    My PMR symptoms came out of no where when it attacked my pelvis/hip area so bad that I would scream initially when getting up,sitting down,or walking a few inches.My C Reactive Protein went from 50 to 90 to 94.8 which is off the charts since an 11 would have been bad. This went on for 3 1/2 months until...

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  • Labrynthitis

    I have had pmr for 3 years, currently on 3mg pred per day. Just about to start the reduction to 2.5 . This week been feeling awful, nausea very dizzy bad ears etc. Doc has diagnosed labrynthitis and just started the meds. The constant nausea is the worst. Anyone any experience?

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  • Purple spots

    Been on pred since mid Nov 2017 started on 30 mg. Now on 15.... seems like every day I find a new reddish,purple spot on my arms. Any idea what might be going on? Are not sore at all.

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  • Pmr 87 year old man

    4 years ago my father had a horrible case of pmr now a relapse..,,,My father has loss of appitite become dehydrated, severe fatigue tacky  heart, blood tested at sed  rate of 75,  Given IV fluids and Doctor gave 10 mg if pred for two days and 5 then on..,. Not helping, All he does is sleep,...

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  • Severe flare

    Ive been off  pred for six weeks now, was on it for three years and did the slow taper. Was doing ok for a while, taking only Tylenol or Aleve but suddenly all of what I had three years ago is back. Can barely walk so using a cane, neck and shoulders so stiff and achy and groin pain is just horrible....

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